The Trisomy 21 Research Society (T21RS), along with the financial and dissemination support of Down Syndrome Affiliates in Action (DSAIA), Down Syndrome Medical Interest Group-USA (DSMIG-USA), GiGi’s Playhouse, Jerome Lejeune Foundation, LuMind IDSC Foundation, Matthew Foundation, National Down Syndrome Society (NDSS), National Task Group on Intellectual Disabilities and Dementia Practices (NTG) and the endorsement of many international Down syndrome organizations, have created a survey for caregivers / family members to complete so that we can learn more about how COVID-19 affects people with Down syndrome (DS). We hope to learn if people with DS are more likely to get sick from COVID-19, and if their illness is related to other health conditions that they may have.
We hope that this information will help identify who is at the greatest risk and how to better protect them.
If you care for a person with DS who has tested positive for COVID-19 or has symptoms of COVID-19, we invite you to complete this voluntary survey. It will take about 10-20 minutes to complete. It asks for: 1) general information about the person with DS, 2) their current health problems, 3) whether they were tested for COVID-19, 4) COVID-19 symptoms and 5) treatments and outcome.
None of the survey data will be linked to you or the person with DS. In other words, it will be anonymous.
You might receive this request to complete the survey many times. Please only complete the survey once for the person with DS for whom you care.